FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC

Financials

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990-EZ for the year ended December 31, 2025, highest compensation first.

Address and contacts

Address (IRS master file)

26777 LORAIN RD STE 311, NORTH OLMSTED, OH 44070-3225

In care of

% FMDSA

Signed the 990-EZ

KAY TANNER, President

Phone

(216) 834-2410

Website

WWW.FMDSA.ORG

Return prepared by

CHARLES T MITCHELL CO PLLC

Mission

FMDSA is a public healthcare related charity working towards better diagnosis and treatments for Fibromuscular Dysplasia (FMD). The organization is engaged in funding and facilitating research, physician education and support, building awareness of FMD within the medical community and patient communities, providing patient support, and in patient education programs.

Program accomplishments

• In 2007, FMDSA laid the foundations for the creation of an FMD medical data registry with the goal of increasing understanding of FMD and providing physicians and researchers with a vehicle to capture and analyze characteristics associated with the disease to identify potential markers and commonly used treatment modalities. The Michigan Clinical Outcomes Research and Reporting Program at the University of Michigan is the coordinating center for the registry. Patient enrollment in the FMDSA Registry increased from 4598 patients at the end of 2024 to 5118 patients at the end of 2025. There are 21 actively participating Medical registry sites. New sites in 2025 included The University of Pennsylvania and Virginia Mason Franciscan Health.
  Expenses $134,965
• Patient support is a large program due to the significant increase in the number of patients diagnosed with FMD annually. The organization continues to grow Volunteer Support Networks with volunteers across the United States and internationally. Patient support also includes social media outreach, including Inspire, Instagram, and Facebook, where thousands of patients participate. The organization is also active on Twitter, allowing patients and physicians to communicate directly. Materials and videos are continuously added to the FMDSA website and YouTube channel, and we offer nearly sixty FMD related videos in multiple languages and work with our international colleagues who offer additional language specific materials. FMDSA continues to host virtual patient meetings for all patients in the US - and worldwide.
• Patient and family member education services. The organization provides educational support and resources for patients educate their family, friends, and healthcare providers about FMD with written materials and videos. Resources that help communicate the complex medical language and physiological elements of FMD are laid out in easy-to-understand terms and materials include a Public Service Announcement and tailored materials designed to bridge the gaps between patients and physicians. The Program also includes educational work with media outlets, other organizations, journals, speaking engagements, and articles. It is a rare day when we are not contacted by a newly diagnosed patient. We have seen the diagnosis rate grow in direct proportion to our programs. We also participate in events such as the Cleveland & Detroit Marathons, along with other high profile well attended events, to help increase awareness and to raise funds to support our programs.
• Physician, research specialist, and other healthcare provider education. We educate medical professionals worldwide at meetings such as the International StrokeConference, Hospital led Conferences, Hospital Grand Rounds, and Research Meetings. The awareness, education, and research happening around the world is a direct result of the seeds FMDSA has been planting since 2003.
• In person meetings. In 2025, the organization participated in in-person meetings, including the American Heart Association Scientific Sessions, the VanSCAD meeting in Vancouver, Canada, the Atrium Health Southeast FMD Patient Symposium, and the Kentucky Neuroscience Expo. The result of this participation is patient representation and awareness of FMD patient perspectives for medical community. It has facilitated improved medical knowledge, the development of critical partnerships and research activity. We maintain a research database on the website which contains medical findings from the FMDSA patient registry, and from other researchers for patients. There are also PowerPoint presentations and videos available for healthcare providers.
• Registry funding. FMDSA has been the sole source of funding and has been the sole sponsor of the North American FMD Registry since 2008. The first participant's data was entered in January 2009. Patient data is collected and rigorously analyzed to learn more about the disease. Research from the date contained in this registry has contributed to the identification of genetic variants connected to FMD (PHARCTR1, ATP281, LRP1, and LIMA1), and in 2024, a key driver gene called UBR4 was discovered. This was a huge advance. Based on the associated genes, researchers believe that 3-5% of the U.S. population may be afflicted with FMD.
• When held in person, FMDSA Conferences bring together FMD patients, including those who have had spontaneous coronary dissection (SCAD), caregivers, and medical professionals. These meeting provides an opportunity for patients to meet others also affected. FMDSA also hosts a separate meeting with researchers to discuss updates and current and future research projects. The forum has provided a platform for research projects, including blood draws, saliva collection, and quality-of-life studies. There is no other meeting in the world where patients have the opportunity to participate in research. Most recently, FMDSA has also participated in and coordinated Zoom webinars and, in 2025, the Annual Conference was held as a virtual event, to support broader, national and global participation.
• One of our most important charters is to educate patients and families about FMD. We offer educational materials, videos, a research section, news and events, and contacts for patients worldwide. The website is a resource for patients, family members, and medical professionals worldwide. FMDSA is the premier resource of FMD information for the layperson and an excellent place for physicians to easily find medical articles and abstracts. The FMDSA website also offers community events for those wanting to get more involved. FMDSA is the recognized leader in FMD support and resources.

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.

IRS record

EIN

01-0771966

Tax-exempt status

501(c)(3): Charitable, religious, educational or scientific organization

Foundation status

Publicly supported organization (170(b)(1)(A)(vi))

Donations deductible (Pub 78)

Public charity, 50% deduction limit

Exempt since

2003

Accounting year ends

December

Files

Form 990 or 990-EZ

Category (NTEE)

Medical research (H90)

Assets (IRS master file)

$134,555

Income (IRS master file)

$158,513

Filing history

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 01-0771966).

Questions about FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC

What is the EIN of FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC?

The employer identification number (EIN) of FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC is 01-0771966.

Is FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC tax-exempt?

Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2003.

Are donations to FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC tax-deductible?

Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).

Which annual return does FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC file?

Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.

When is the next return of FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC due?

The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.

When did FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC last file with the IRS?

The latest return in the IRS public files is the 990-EZ for the year ended December 2025.

Who are the officers and directors of FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC?

The 990-EZ for the year ended December 31, 2025 lists 6 people; 0 received compensation from the organization.

How much revenue does FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC have?

On its 990-EZ for the year ended December 31, 2025 it reported revenue of $158,513, expenses of $161,812 and total assets of $134,555 at year end.

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